depressed

Hi Christine,
I don't really have any answers for you but wanted to let you know I feel for you and understand why you are down about it all. My understanding of scar tissue is that we all have it after surgery and its with us for good but as for the pain your dealing with I wouldn't imagine that will be a long term problem. How long since you had your surgery? Perhaps you are still healing. Also you said you guess this is all your fault, now that I certainly don't agree with, its definately not your fault at all. Have you discussed with you doc about having your anus sewn closed? I had mine done about 4 months after my ileostomy and found that once that healed I no longer had the feeling that I needed to poop and no more discharge from that area either. I did find it beneficial for me. I hope someone else will be along soon to guide you better and give you some advice as to where you could go from here. But hang in there I know it has to get better. Thinking of you
(((((((((hugs)))))))))

Christine,

I feel for you. It is hard to predict. Do ask your doc these questions. Remember I was the one whose colon, rectum, and small bowel all scarred shut from what turned out to be an unneeded sigmoid colon resection upon medical review of my case. The best that could be done for me was lysis of severe scar tissue on my small bowel so I would not continue to have small bowel obstructions and permanent ileostomy. SO far no small bowel adhesion reobstructions, BUT it is a fear I have to live with daily. So far no pain and that I realize can get to you more than worry.

Remember prior to your having this surgery, I did post my experience with life threatening amounts of scar tissue. Scar tissue and adhesions are something that are never mentioned by surgeons until AFTER the fact then they say "oh yeah, scar tissue, that just forms in some people more than others" (like that is supposed to do us any good.) I think possible adhesions and their possible ramifications should be on every surgical consent form. Google Karen Steward and you will find her book "Doctors Bound by Secrecy, Patients Bound by Pain."

I remember at the time of my posting to you, some others felt that I was scaring you with my story. Perhaps so, but I felt it best to get the information out there to you. You, like I (for my original surgery of having the simgoid resection) were working with the information we were given at the time. Though I posted my adhesion experience, this possible issue was not mentioned by your doctor who is ultimately the one we look to and that we have to look to.

You were also battling with the fact that you had to take some medication off and on that was spiking your blood sugar, though at the time whatever intestinal disease you had was pretty much in remission (but you could not predict that it would stay that way). You also could not predict the long term effects of having a spike in blood sugar.

You were making the best decision you could make at the time. I REALLY feel for you as you are in a situation with pain from adhesions rather than intestinal blockage from adhesions, but our whole regret thing is so similar. As far as I know, unless adhesions scar tissue is cut or lysed, it is there for good. Do ask your doc about the pain and what to do about it. So much is chalked off to "healing pain" which it is not, it is scar tissue pain. Before My small bowel adhesions were lysed and the ileostomy was done, I had terrible pain in addition to small bowel obstructions. Since that "fix up surgery" SO FAR, I've had neither pain nor another obstruction. SO things can be done IF you find the right doc.

So ask what to do about the pain and I am really in your corner.

There is not a day that goes by that I don't kick myself, BUT, the reality of the matter is that we can never go back in time. All we have is the now. That is why all my traveling.

Hang in Christine as things can be done for you.

Rosemary

so sorry you're in so much pain Christine :( i hope it gets sorted soon. if the pain is so intense, then don't give up till they find the source of it.

Good for you Chris for insisting on seeing this doc with the CD. I was one that asked specifically about complications of the sigmoid resection. THey never mentioned the ones I ended up getting. They also did not tell me when part of the colon is removed they staple the ends together. 3 surgeons did not tell me that. Had I known that I would not have had the surgery as I am "tissue reactive" and I told them that. Scar tissue forms ANY time there is any invasion of any body tissue be it first time or after multiple surgeries. It is the least publicized yet one of the most prevalent complications of surgery. AND most people get it to some degree. Hind sight is 20/20 isn't it. Good luck on Wednesday.

Rosemary

Hi Christine -  I've been following your situation for awhile and have complete empathy for you. 

I had my ileostomy done in October of 06 at the age of 66.  Recovery for me was long and painful, but there was a recovery and the elimination of pain.  In fact, it was about one year before I was completely pain free.  I got hooked on percocet and only got off of them about 6 months ago.

Please hang in there.  Better days are ahead.

Tom

hi christine

Ican sympathise with the pain you are in. I am in hospital just now and they are trying to find out why I am in so much pain. adhesions have been mentioned. I am scheduled for a procedure on monday and will  hopefully get more answers then. I went seven months feeling good but have had pain  since july. Glad you are seeing your doc and hope you can sort this out soon. The pain is draining.

emzzie

Hey Christine :D

I've been following your posts... I surely hope this course of antibiotics helps you... I've been thinking about you quite often!

Hugs... SP